Young patient pounds pavement to help families facing celiac disease

August 3, 2005

Leah Steans-Gail has had an unusually busy summer.

The 8-year-old Chicago native camped, swam, and chased fireflies at night like other children her age. But Leah is no ordinary 8-year-old. She’s ran in five 5K races this year. On August 7, 2005, she’ll run in the Chicago Distance Classic 5K to raise funds for a cause that is close to her heart.

Leah raised more than $5,000 in pledges for the I’m Going the Distance for Families Facing Celiac Disease, a program that benefits the University of Chicago Celiac Disease Program. The money she raised will support celiac disease education programs that are necessary to raise diagnosis rates and meet the needs of people with the condition through education, research, and advocacy.

"Leah’s dad helped her by sending out an email to family and friends letting them know that she is running in the Chicago Distance Classic to raise money for celiac disease," said Robin Steans, Leah’s mother. "As Leah was reading all the responses, I think she finally grasped the importance of what she was doing because she said, ‘Wow. I can’t believe all these people are supporting me.’

"And she saw how many thank-you letters she had to write, and then I think she really understood the importance of her fund raising," Steans said with a laugh.

"It was really nice for all those people to give," Leah said. "I’m glad they feel that this is a good cause to be donating to, and I’m glad that Dr. Guandalini is the doctor I am helping. He’s great."

Leah was diagnosed with celiac disease at age 3. Her mother realized something was wrong because she said Leah was not thriving. She was wearing the same size of clothes at age 3 that she fit into at age 2. She wasn’t gaining weight or growing taller. She was having diarrhea, and her personality changed from that of a happy child to one who was irritable.

Leah’s pediatrician suspected celiac disease. When a blood test came back positive, her doctor referred her to Stefano Guandalini, MD, chief of pediatric gastroenterology, hepatology and nutrition at the University of Chicago Comer Children’s Hospital and medical director of the Celiac Disease Program.

Leah had an endoscopic biopsy of her small intestine, which confirmed the diagnosis: She had celiac disease and would have to adhere to a lifetime gluten-free diet.

Celiac disease is an inherited autoimmune disorder that affects the digestive process of the small intestine. It’s characterized by intolerance to gluten, a protein found in wheat, rye and barley. When a person who has celiac disease consumes gluten, the individual’s immune system responds by attacking the small intestine and inhibiting the absorption of important nutrients into the body.

"When I came to the United States, I was shocked at how few children and adults were diagnosed with celiac disease," Guandalini said. "I knew something had to be done, and that’s why I created the University of Chicago Celiac Disease Program."

The program has helped more than 11,000 people in the past five years, with telephone support, community outreach presentations and care packages for newly diagnosed patients, while advancing celiac disease research and medical education.

"More than 2 million Americans have celiac disease, and most don’t know it," Guandalini said. "Thanks to Leah’s gift, our program will be able to reach hundreds more people and give them important information."

The prevalence of celiac disease in the United States is estimated to be one in 133 individuals. The average length of time it takes for a symptomatic person to be diagnosed with celiac disease in the United States is 11 years. On average, a child will visit eight pediatricians before being diagnosed with celiac disease.

Undiagnosed and untreated, celiac disease can lead to the development of other autoimmune disorders, as well as osteoporosis, infertility, neurological conditions, and in rare cases, cancer.

The only treatment for celiac disease is to follow a gluten-free diet, which stops symptoms, heals existing intestinal damage, and prevents further damage and medical complications.

"Leah is doing great on the diet," Steans said. "It made a huge difference within a month after she started it. But as she gets older, she’s realizing there are all these things she can’t eat. She’d like to order a pancake for breakfast, but she knows she can’t have it. With celiac disease, you can’t cheat--not even a bite."

"Sometimes it’s hard watching other people eat things that I know I can’t have," Leah said. "But I just stick with it."